We must do better for our most seriously ill children

How is it that, in this day and age, a talented teenager treated for lymphoma emerges cured but with a life-threatening eating disorder? How is it that, in our nation’s capital, a boy dying at home from neuroblastoma experiences excruciating pain in his final moments? How is that, when we develop new drugs to treat children with cancer, we do not, at the same time, routinely and in a standardized manner ask them how they are feeling?

Children with cancer and their families are known to receive high levels of supportive care compared with children who have serious illnesses other than cancer. Yet, as became clear in the workshop, supportive care for pediatric oncology is not yet a gold standard. This suggests that other seriously ill children fare even worse. At a time when more and more children with cancer and other serious illnesses are surviving or living longer, we must make such support an integral part of treatment at all stages of children’s illness.

Every day, thousands of children are living with cancer. Hundreds of thousands are living with other serious illnesses, such as cystic fibrosis and advanced heart disease, and too many experience undue suffering. Too many families offering loving and devoted care to these children are impoverished emotionally, physically and financially. Yet clinician education and training at all levels does not address families’ need for supportive care.

While some academic medical centers, like the one where I work, have robust pediatric palliative care programs staffed by physicians, social workers and nurses, many other hospitals have none. Indeed, on average, there is less than one physician dedicated to palliative care among our freestanding children’s hospitals.

Supportive care services in hospitals, clinics and the community are too often spotty, under-resourced and not reimbursed. One of the most remarkable findings reported at the Institute of Medicine meeting was that during the first six months of children’s cancer treatment, 30 percent of families experience food, energy or housing insecurity—raising a profound issue that cannot be resolved by the health care system alone.

While care models are emerging, the pace of progress is simply too slow. To move forward, we must broaden our priorities and devote adequate resources to the supportive care needs of our patients. In the quest for cure or extension of life, we must elicit families’ hopes and dreams for themselves and their children, even in the face of illness, and help them maximize their quality of life. Living with cancer at any stage is fraught with uncertainty. Supportive care clinicians have the expertise to help patients and families—who are often overwhelmed—live every day as well as possible.

We must guide patients and families through a maze of difficult medical decisions so they emerge understanding and accepting the choices they’ve made. We must, at the most basic level, manage the pain and other symptoms that accompany the child’s illness and corral resources to alleviate families’ economic hardship. We must work with primary care pediatricians who have ongoing relationships with the family and community of the seriously ill child. In cases where the end of life approaches, we must help families and children through one of life’s most excruciating moments and support them in their bereavement.

Care of children with serious illness is siloed. There are those who work toward advancing disease outcomes and those who work toward improving supportive care. Merging these forces would advance both priorities concurrently. The Children’s Oncology Group, a cooperative group funded by the National Cancer Institute, is dedicated to improving outcomes for all children with cancer.

What is that outcome? It should not be survival alone. We must strive for survival and well-being for children with serious illness and their families.